I have been dealing with low platelets and enlarged spleen since late 2019. In January 2021, a bone marrow biopsy and aspiration together with blood work diagnosed my with having low grade B cell Lymphoma/Leukemia - Lymphoproliferative Disorder. I am trying to find someone who has this and are you showing any symptoms yet and what you are doing about it.
One of the great problems of our time is that modern medical practice has not yet met the full meaning of having multiple diseases and disorders. I have listed many of mine on these pages. I am pretty sure that I have at least a couple thousand diseases, phenotypes, and disorders that may be messing with my life, especially through all the protein changes and mutations and "unknown significances". Anyway, the search for the gen and its effects are the core of truth in modern medicine. If you have not had one of the better labs, such as Nebula or Sequencing .com do an analysis, do it. The price is well worth it, and you will learn great things.
oldkarl
In late 2019, my platelets began to drop. In January 2021, blood tests and a bone marrow biopsy and aspiration diagnosed me with having Lymphoproliferative Disorder - low grade B cell Lymphoma/Leukemia. There is no cure and treatment is offered when I start showing symptoms. Are any of you dealing with this?
catalinae | @catalinae wanted to do a private comment; but don't know how. I sincerely appreciate someone who can understand blood disorders and avoid cold. I have cold urticaria - anaphylaxis shock when I get cold. I've always been high on iron (but) first time ever; I'm have MF and PV. We have opposite problem; you have macroglobulin (red blood cells to big > over 100) I have macrocytic anemia (red blood cell is
Thank you for your note! I really appreciate any and all ideas from anyone that can understand what we are going through. I am not familiar with this system,so in order to have a private comment,please allow me more time to understand what I am doing. Hugs!
catalinae | @catalinae wanted to do a private comment; but don't know how. I sincerely appreciate someone who can understand blood disorders and avoid cold. I have cold urticaria - anaphylaxis shock when I get cold. I've always been high on iron (but) first time ever; I'm have MF and PV. We have opposite problem; you have macroglobulin (red blood cells to big > over 100) I have macrocytic anemia (red blood cell is
Since you are experiencing tingling in your hands, you may want to contact the IWMF’s LIFELINE resource and contact a volunteer for Peripheral Neuropathy. The IWMF also provides worldwide support groups and you can join more than one. May I ask if you are experiencing more symptoms?
Thank you for reaching out for support. WM is a very rare blood cancer. While it can be an overwhelming diagnosis, there are treatment options and hope. I was diagnosed with Waldenstrom’s Macroglobulinemia in 2014 and was immediately referred to a WM specialist at Mayo to coordinate my care with my Mayo Rochester specialist.
I contacted the International Waldenstrom’s Macroglobulinemia Foundation, I.W.M.F., for support and amazing educational resources. If you go to the following website: https://iwmf.com/join-the-iwmf/#
you can then click on the JOIN button. You will receive a new member packet with invaluable WM information.
Since you are experiencing tingling in your hands, you may want to contact the IWMF’s LIFELINE resource and contact a volunteer for Peripheral Neuropathy. The IWMF also provides worldwide support groups and you can join more than one. May I ask if you are experiencing more symptoms?
Since I am very new to this, I was hesitant to or not sure what I felt applied to WM. After reading information given to me by my Dr. ,I realized I also have Reynaud's. I did not associate this with WM,as I have had this for some time and was told " nothing"could be done ,but never thinking it would be connected to WM,or was serious.
Ignorance is bliss,I guess since I did not pursue more information on this.
I thank everyone for responding and for assuring me I am not alone.
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catalinae Thank you for your reponse, any up dates lets us know. Prayers and hugs!
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3 ReactionsYou are welcome and please do not hesitate to reach out.
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1 ReactionI have been dealing with low platelets and enlarged spleen since late 2019. In January 2021, a bone marrow biopsy and aspiration together with blood work diagnosed my with having low grade B cell Lymphoma/Leukemia - Lymphoproliferative Disorder. I am trying to find someone who has this and are you showing any symptoms yet and what you are doing about it.
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2 ReactionsIn late 2019, my platelets began to drop. In January 2021, blood tests and a bone marrow biopsy and aspiration diagnosed me with having Lymphoproliferative Disorder - low grade B cell Lymphoma/Leukemia. There is no cure and treatment is offered when I start showing symptoms. Are any of you dealing with this?
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Like -
Helpful -
Hug
2 ReactionsThank you for your note! I really appreciate any and all ideas from anyone that can understand what we are going through. I am not familiar with this system,so in order to have a private comment,please allow me more time to understand what I am doing. Hugs!
-
Like -
Helpful -
Hug
4 Reactionscatalinae | @catalinae wanted to do a private comment; but don't know how. I sincerely appreciate someone who can understand blood disorders and avoid cold. I have cold urticaria - anaphylaxis shock when I get cold. I've always been high on iron (but) first time ever; I'm have MF and PV. We have opposite problem; you have macroglobulin (red blood cells to big > over 100) I have macrocytic anemia (red blood cell is
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Hug
1 ReactionYou are so welcome, it is such a comfort to be able to communicate with others!😇
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2 ReactionsI did join today. Thank you for the info!
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3 ReactionsThank you for the information,I will pursue.
Thank you,thank you! Please excuse any errors in responding, trying to figure out the system.
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1 ReactionSince I am very new to this, I was hesitant to or not sure what I felt applied to WM. After reading information given to me by my Dr. ,I realized I also have Reynaud's. I did not associate this with WM,as I have had this for some time and was told " nothing"could be done ,but never thinking it would be connected to WM,or was serious.
Ignorance is bliss,I guess since I did not pursue more information on this.
I thank everyone for responding and for assuring me I am not alone.
Take are to all!
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Like -
Helpful -
Hug
4 Reactions